Hepatic Encephalopathy - the biggest struggle of my life

My dad was admitted to the hospital on August 13th and I came to town on August 16th with a plan of staying until October 16th...I'm struggling with it.

This is an email I sent my family. The only thing on the list that wasn't really a reason for the visit was his Diabetes.

"I'm sending some info about Dad's various health issues we are dealing with. I think it is important for everyone to be on top of things. Mom needs support and backup when possible.

Diabetes - From what I understand, Dad is a terrible diabetic. He has manipulated his insulin to eat things he shouldn't. I have heard about this from family and friends of his. His diet is regulated at the hospital. He should only be eating what is brought to him on his tray. What he ends up eating off the tray is logged. Right now, his blood sugar is getting closer to a healthier level, which, ideally is under 140. Food should not be brought to him. He, at this point, cannot make decisions about foods that impact his diabetes negatively. His intake of fruit or cake are both an issue. Anything ending in -ose is sugar.

Grade II esophageal varices - These are, essentially, varicose veins like people have in their legs. However, these are in the esophagus. The issue with these is the possibility of rupture and bleeding. Dad is a bleeding risk and his platelets tend to be low so if this were to rupture, it would be a very serious, if not fatal, situation. When he was at the Clinic, he had a procedure to have them banded. They only band up to 6 and that was what happened with that. In a couple weeks, he will go for his first follow-up check and will continue to have things checked. I don't remember how often.

Nonalcoholic steatohepatitis (NASH) - This is his cirrhosis. The liver hardens and then things go downhill. His liver does not function properly and will not ever again. The failure is what causes the big problems. It causes the fluid that builds in his abdomen and things like the high ammonia. It just can't filter out the toxins.

Hepatic Encephalopathy - This is liver related brain malfunction. Toxins, like ammonia, that are not being filtered correctly make their way to the brain. I'm pretty sure everyone has witnessed this in Dad. The ammonia levels are a big part, but other things that aren't flushing out through the liver can add to it. The treatment for the ammonia issue is a drug called lactulose. You have probably been in his room when he has taken it. It is a syrupy orange liquid that he turns his nose up at. Today he was increased from 4 to 5 times a day. You may notice him needing to use the commode more as his body adjusts. This might get a little better, but his confusion/agitation is pretty much his new normal.

Splenomegaly - This is an enlarged spleen and it is another effect of the liver disease.

Recurrent Ascites - This is the abdominal fluid that he has to have drained. His drainage has been a little over 5 liters, 5.5 liters, and 9.5 liters. You may have noticed his abdomen on the left side looking full again. There has not been talk of another tap yet. They are trying diuretics (meds that cause urination to flush the system), but it doesn't seem a likely solution. Continuing taps will most likely be the way things go from here on out.

Thrombocytopenia - This is low platelets. He should never be on a blood thinner because of this. The severity of the bruising he has on his arms are an example of his bleeding problem.

Now, for something on the upswing that needs to be encouraged. He has physical therapy twice a day and once a day he has occupational therapy. He has surpassed expectations at this point. It's great, but once he comes home, he needs to keep things up and not go back to the sedentary lifestyle he has been living. An example of something is not spending all his time in his chair and not using the lift function in place of using his own strength. He hasn't worked on steps yet, so not sure how that will go. If he could just manage the few steps to get in and out of houses, that would be better than nothing. Getting back to Church is something he has mentioned, but again, that is not something easy and he'll really need to work on that. I'm not sure how this will all play out, but right now, he's doing more than I ever expected.

Also, family is allowed to be with him in the therapy room. The times vary, so you'll have to check. It is on the 4th floor. This can be good for moral support and giving the therapists info. He really can go off on tangents and think he's answering questions when he really isn't.

There are more things I have done, seen, heard, and learned since I got here in mid-August than I ever expected for my life. If you have questions or anything, you can ask and I'll see if I know. Or, get in touch with Mom.

Thanks"

On September 16th he got discharged after bouncing around from hospital to hospital and back to the original hospital.

Of all the things on this list, Hepatic Encephalopathy is the worst to deal with as far as care giving. He is a completely different person. At times, my mom and I look at each other with a head shake. I've said it's like dealing with a toddler sometimes. I've heard him say things I've never heard from him. His abdominal fluid issue is relieved for a time when he has tapped. This doesn't work like that. The medication used for it is only really used to try to keep things somewhat under control. Honestly, I cannot picture what he would be like without the medication.

The is the most difficult time of my life and I had ECT and lost my memory of 2016.

Dog walking: A guest post from Shawn

Jarvis and me on a walk...

Jarvis: Hang on, I'm going to poop.
Me: Okay.
Jarvis: Okay, this is a good spot. Let me just...
Me: Hang on, don't do it there. Come over here a ways.
Jarvis: Oh, I shouldn't poop?
Me: Yes, go ahead, I just didn't want you to do it over there, right next to those people's window. Just do it over here.
Jarvis: I see, no pooping then.
Me: What? No, you can poop, just not over there. Go ahead.
Jarvis: I understand. I won't poop then.
Me: Why are you being like this? I think you're being passive-aggressive.
Jarvis: I don't know what that is. It sounds like a human thing.
Me: Are you going to poop or what?
Jarvis: No need.
Me: -sigh- Fine.

Twenty minutes later, at home...

Jarvis: Take me out, I need to poop.

***

Another walk with Jarvis...

Jarvis: GRRRRR
Me: What's the matter?
Jarvis: I hate those guys so much!
Me: Who? You mean those two dogs, that are like a block away? The ones you've never actually interacted with? You hate them?
Jarvis: SO MUCH!
Me: Why? What did they--
Jarvis: HEY ASSHOLES! YEAH, YOU! I THOUGHT I TOLD YOU NEVER TO COME AROUND HERE!
Me: Jarvis, they live three doors down from us.
Jarvis: DON'T ACT LIKE YOU CAN'T HEAR ME! IF I GET A HOLD OF YOU, I'M GOING TO RIP OFF YOUR HEADS AND SHOVE THEM UP EACH OTHER'S BUTTS!
Me: They're both bigger than you; I'm pretty sure they'd beat the crap out of you!
Jarvis: DO YOU KNOW WHO I AM? DO YOU KNOW WHO THE FUCK I AM?!?!
Me: Jesus, Jarvis, chill out! Where did that come from? Look, they're gone now, you can relax.

Jarvis: ~whine~

Me: Now what's wrong?
Jarvis: I miss those guys...

What's in a name?

I found out today that a man who was a big part of my childhood died. He and his wife were friends of my parents and went to the church of my childhood. He and his wife were the creators of "Megala". One of my many nicknames. I decided to go through my nicknames, well, as many as I can remember.

Meg (my first ever nickname since my given name is Margaret)
Megala
Margar
Midge
Peggy
Peggy Sue
Megaroni
Megra
Meggo
Meggles
Megster
That Girl
Megger
Marge
Moony
Babe

I am my father's daughter

I've been on the phone with my dad a couple of times this last week. His health is not good and that, in my ever so humble opinion, is also impacting his mental health. He's not happy. He tells me about how much my mom has to do for him these days. I get the vibe that he's feeling humiliated by it all. He gets choked up and tells me that he's always thanking my mom for each thing she does. She tells him he doesn't need to thank her. They've been married 51 years. I told him it is what you do.

Shawn and I will be married 11 years in a few days. As I have conversations with my dad about what my mom does for him. I get him. I relate. In our time together, Shawn has had to do so much for me in regards to my physical and my mental health. I honestly can't think of anything I have ever had to do for him. Not one damn thing. Obviously I don't wish Shawn to be sick. It's more about feeling bad that the scales are so out of balance.

They have 51 years, Shawn and I have 11. However, my dad and I are kind of in the same place.

Hold On

Yesterday, Wilson Philips' Hold On came up on my iTunes. I tried to get that song to change me in junior high. I wanted it to be my anthem. My childhood anxiety and loathing (which, we all know, has come with me into adulthood) were in need of some kind of help, especially since I was hiding things. I mean, I chose my Confirmation name (non-Catholics, it's a name you choose when confirming your faith. For me, it was in junior high) because I thought I was so terrible. The Saint whose name I chose was Augustine of Hippo. He was a sinful guy. He was hedonistic. He was a wild child. But, he turned his shit around. He became a saint. I thought this was amazing. If he could turnout to become a saint, I most certainly could be a better person than the one I was at the time.

Maybe I am a better person than I was.

But yesterday, when the song came on, it made me smile. Bridesmaids changed that song for me. Kristen Wiig and Maya Rudolph doing there jam to that song was so amazingly awesome. The whole movie is so funny, I've seen it multiple times, which I don't typically do with movies. So, it's a different anthem, I suppose.

"Things'll go your way

If you hold on for one more day
Can you hold on for one more day
Things'll go your way
Hold on for one more day"

And so...

I woke up around 2:30 this morning. It was all about the puking. It's been a good month or two since my last go 'round with my asshole stomach.

Today is the 5th anniversary of my hysterectomy. I had this thought that my stomach was trying to remind me of the whole disaster which was all my reproductive parts. Well, all except one of my ovaries. Anyway, I don't know that I really believe in something like that, but it did cross my mind.

How has it been 5 years? Each year I want it to get easier and I'm not sure that it does. Maybe it's a little more difficult this year because my remaining ovary is kind of a bitch lately. I've been thinking about having it taken out. Taking it out means instant menopause. Do I want that? I don't know.

On to another year.

#InHerOwnTime

I'm pretty sure I've already touched on this subject, but here we go again. Another woman coming forward to tell her story of sexual assault years after it happened. Questioning why a victim waits to tell their story should be over by now. It's like how the same questions and statements are made after a mass shooting. We need to move beyond these questions each and every time and start to really acknowledge the problem and try to change it.

The latest story in the media is another victim of the President. E. Jean Carroll has come forward several years after her assault to tell her story. Of course the President does his typical denials and slings insults. He attacks her looks as an excuse, claiming she isn't his type. Assault isn't necessarily about attraction, it's about power, and we certainly know how much power tripping he's got going on.

Victims come forward in their own time. They have several reasons for coming in that time. Even if the President wasn't in the Oval Office, his life holds wealth, power, and fame. He had a way of using those thing before being President and of course took them with him into office.

Victims come forward in their own time. Some need time to work through the shame they felt as a result of the assault. Or, the perp was an upstanding member of society who the victim was afraid to name. Maybe they took a payoff and/or signed an NDA and later decided that was the wrong way to go. No matter what, it is always #InHerOwnTime.